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just got the news..

Forums General Melanoma Community just got the news..

  • Post
    lost
    Participant

    I was just recently diagnosed…literally hasn't been but a couple of weeks. They say I have stage iv with tumors on my colon, lung, spine, spinal cord, and on my brain. So far I haven't really been given anything towards my next step, just that it will most likely involve surgery, radiation, and chemo.  I'm so in the dark about this and how to deal with this for myself and my family and kids. Can anyone point me in a direction?

    I was just recently diagnosed…literally hasn't been but a couple of weeks. They say I have stage iv with tumors on my colon, lung, spine, spinal cord, and on my brain. So far I haven't really been given anything towards my next step, just that it will most likely involve surgery, radiation, and chemo.  I'm so in the dark about this and how to deal with this for myself and my family and kids. Can anyone point me in a direction?

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  • Replies
      lhaley
      Participant

      I am so sorry that you have had to join us.  Where are you located?  Are you seeing a melanoma specialist?  

      Usually they deal with brain tumors first, then they go on to the other tumors. Right now I'm sure you need some hope and inspiration.  Read Jill post that she wrote tonight.  Also the post of stage IV patients.  Make sure that your Doctor has sent away your tumor to be tested for the b-raf mutation.  You didn't say where your primary started, some have mucosal melanoma that has it's own mutation.   There is so much to learn but you really need to guided by an oncologist that specifically deals with melanoma. 

      Give a little more information and that will help others guide you.

      Linda

      Stage IV since 06

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      lhaley
      Participant

      I am so sorry that you have had to join us.  Where are you located?  Are you seeing a melanoma specialist?  

      Usually they deal with brain tumors first, then they go on to the other tumors. Right now I'm sure you need some hope and inspiration.  Read Jill post that she wrote tonight.  Also the post of stage IV patients.  Make sure that your Doctor has sent away your tumor to be tested for the b-raf mutation.  You didn't say where your primary started, some have mucosal melanoma that has it's own mutation.   There is so much to learn but you really need to guided by an oncologist that specifically deals with melanoma. 

      Give a little more information and that will help others guide you.

      Linda

      Stage IV since 06

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        lost
        Participant

        about 8 years ago I had a small splotch on my neck that they told me was an early sign of melanoma and had it removed. had a check up every year until 2 years ago. They have yet to establish where my primary is..thank you for replying.

        I'm located in MIssouri

        Sarah

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        lost
        Participant

        about 8 years ago I had a small splotch on my neck that they told me was an early sign of melanoma and had it removed. had a check up every year until 2 years ago. They have yet to establish where my primary is..thank you for replying.

        I'm located in MIssouri

        Sarah

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        NicOz
        Participant

        I am so sorry to hear this has happened to you. I wish their was a direction to point you to which would help you deal with this obviously huge shock.

        You mention tumours on the spinal cord and the brain- did your doctors use the term leptomeningeal, or lining? (Sorry, I'm trying to piece together a clearer picture before I can post a more detailed response)

        Nic

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        NicOz
        Participant

        I am so sorry to hear this has happened to you. I wish their was a direction to point you to which would help you deal with this obviously huge shock.

        You mention tumours on the spinal cord and the brain- did your doctors use the term leptomeningeal, or lining? (Sorry, I'm trying to piece together a clearer picture before I can post a more detailed response)

        Nic

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        lost
        Participant

        They said lining..sorry I'm not producing all the information in one response. Everything is still a bit a blur from it all

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        lost
        Participant

        They said lining..sorry I'm not producing all the information in one response. Everything is still a bit a blur from it all

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      NicOz
      Participant

       

      I am going to place a link here for the profile of a lovely lady on this site, who has lemptmeningeal disease. Yes, it would be more helpful for you if you were able to provide any specific information the doctors have given you with regard to your diagnosis. But that is not a criticism by any means- it's often hard to recall things in times of severe stress.

      Her name is Amy Busby, and from that profile you will be able to see how she is being treated for her leptomeningeal disease, so I'm in an awkard position where I don't want to leave you with no information, but I also don't want to send you looking in the wrong direction,  but now that you mention lining, it's sounding like Amy could be helpful. You will also be able to access her previous posts from there, and be able to glean some information which may be relevant to you IF you have leptomenigeal disease.

      https://www.melanoma.org/community/profiles/amy-busby

      I wish I could be of more help, but I'm not knowledgable regarding leptomeningeal disease more than just a basic understanding.

      This is a wonderful site to ask questions, however. And vent. And ask for any help you might need. But really, as hard as it sounds, it's very hard to comment about too much without information, and your doctors should be the people you are getting your original knowledge from concerning the disease, treatments etc..

      I hope you have an appointment scheduled to talk to your doctors soon, and that you are seing a melanoma specialist. Please take someone in with you, a pen and paper, a list of questions that you want answered.

       

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      NicOz
      Participant

       

      I am going to place a link here for the profile of a lovely lady on this site, who has lemptmeningeal disease. Yes, it would be more helpful for you if you were able to provide any specific information the doctors have given you with regard to your diagnosis. But that is not a criticism by any means- it's often hard to recall things in times of severe stress.

      Her name is Amy Busby, and from that profile you will be able to see how she is being treated for her leptomeningeal disease, so I'm in an awkard position where I don't want to leave you with no information, but I also don't want to send you looking in the wrong direction,  but now that you mention lining, it's sounding like Amy could be helpful. You will also be able to access her previous posts from there, and be able to glean some information which may be relevant to you IF you have leptomenigeal disease.

      https://www.melanoma.org/community/profiles/amy-busby

      I wish I could be of more help, but I'm not knowledgable regarding leptomeningeal disease more than just a basic understanding.

      This is a wonderful site to ask questions, however. And vent. And ask for any help you might need. But really, as hard as it sounds, it's very hard to comment about too much without information, and your doctors should be the people you are getting your original knowledge from concerning the disease, treatments etc..

      I hope you have an appointment scheduled to talk to your doctors soon, and that you are seing a melanoma specialist. Please take someone in with you, a pen and paper, a list of questions that you want answered.

       

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        NicOz
        Participant

        It was lovely to speak with you, Sarah. I'm so happy that you'll be meeting with your docs on sunday and have some people with you while you do it (makes it easier to 'debrief' after those kind of things) I'm sorry about having to leave you in the lurch for a bit when my visitor showed up, but it was someone wanting to assure themselves I was ok after my surgery) Just a couple of days, although I'm sure it feels like an eternity for you, and you'll be feeling more informed and empowered simply by knowing more about what is happening- at least, I hope that will be the case :)

        When/If you are up to it, whenever that me be, please create a profile here. It makes it easier to people to keep track of where you are at. But if it's just too hard, then don't. This is about doing what is right for you.

        Take care. I hope you're being good to yourself. You need to allow yourself time to absorb what is going on physically, mentally and emotionally before you can formulate your response and determine exactly how you're going to try to deal with what has happened to you.

        And I understand your terror about your children. Talking with you put me into a time warp of how I felt 3 years ago, and continue to feel at different times, even now. So you need to give yourself little time outs, go into a room by yourself sometimes, and let some of those emotions surface instead of trying to hold it together on the outside. It WILL help you start to be able to gain a bit of control on the inside, and once that happens, the outside follows as a natural course.

        Thinking of you. Remember, have your questions at the ready, don't be afraid to ask them to answer the same questions until you better grasp when they have said to you, either. This is all about YOU. I hope you'll come back when you're up to it and let us know how you are, but remember that at the moment, you need to do what is right for you. Your obligation is to yourself- that's not selfish, it is essential. It took me a while to learn that once I sorted out my own bits and pieces, it was better for everyone involved around me (and I know you're concerned about your family)- so it isn't selfish, it's necessary.

        Good luck for Sunday. I'll be hoping it helps you being able to talk to your docs, and that you'll have less questions and uncertainty. Can I just make one suggestion?- that you don't ask for a "time frame" from them, because you aren't a statistic. You're you. An individual, and I've seen far too many people walking around with an invisible calendar on their shoulders weighing them down when it turns out they didn't need that baggage, and those statistics didn't apply to them after all that wasted stress. It's something we don't know until we know, and frankly it's like a parasite that sucks the energy out of people. And you need your energy. You have work to do!

        Fingers crossed for you to come out of that appointment with a modicum of a sense of control and self-determination. If you can do that after the devastating blow you've so recently been dealt, then you will be ahead of the game :)

        xxx

        (Sorry this is long, and probably a bit more personal than I tend share on here- my bad! It's still a bit bossy, though I already warned you about that :P)

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        NicOz
        Participant

        It was lovely to speak with you, Sarah. I'm so happy that you'll be meeting with your docs on sunday and have some people with you while you do it (makes it easier to 'debrief' after those kind of things) I'm sorry about having to leave you in the lurch for a bit when my visitor showed up, but it was someone wanting to assure themselves I was ok after my surgery) Just a couple of days, although I'm sure it feels like an eternity for you, and you'll be feeling more informed and empowered simply by knowing more about what is happening- at least, I hope that will be the case :)

        When/If you are up to it, whenever that me be, please create a profile here. It makes it easier to people to keep track of where you are at. But if it's just too hard, then don't. This is about doing what is right for you.

        Take care. I hope you're being good to yourself. You need to allow yourself time to absorb what is going on physically, mentally and emotionally before you can formulate your response and determine exactly how you're going to try to deal with what has happened to you.

        And I understand your terror about your children. Talking with you put me into a time warp of how I felt 3 years ago, and continue to feel at different times, even now. So you need to give yourself little time outs, go into a room by yourself sometimes, and let some of those emotions surface instead of trying to hold it together on the outside. It WILL help you start to be able to gain a bit of control on the inside, and once that happens, the outside follows as a natural course.

        Thinking of you. Remember, have your questions at the ready, don't be afraid to ask them to answer the same questions until you better grasp when they have said to you, either. This is all about YOU. I hope you'll come back when you're up to it and let us know how you are, but remember that at the moment, you need to do what is right for you. Your obligation is to yourself- that's not selfish, it is essential. It took me a while to learn that once I sorted out my own bits and pieces, it was better for everyone involved around me (and I know you're concerned about your family)- so it isn't selfish, it's necessary.

        Good luck for Sunday. I'll be hoping it helps you being able to talk to your docs, and that you'll have less questions and uncertainty. Can I just make one suggestion?- that you don't ask for a "time frame" from them, because you aren't a statistic. You're you. An individual, and I've seen far too many people walking around with an invisible calendar on their shoulders weighing them down when it turns out they didn't need that baggage, and those statistics didn't apply to them after all that wasted stress. It's something we don't know until we know, and frankly it's like a parasite that sucks the energy out of people. And you need your energy. You have work to do!

        Fingers crossed for you to come out of that appointment with a modicum of a sense of control and self-determination. If you can do that after the devastating blow you've so recently been dealt, then you will be ahead of the game :)

        xxx

        (Sorry this is long, and probably a bit more personal than I tend share on here- my bad! It's still a bit bossy, though I already warned you about that :P)

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      TAC
      Participant

      If you are not being treated at a major melanoma center (MD Anderson, Moffitt, Sloan Kettering, etc.), you might want to go to one near you. They will also have docs that specialize in melanoma. They can then provide you with a comprehensive plan and approach for treatment. Best wishes.

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      TAC
      Participant

      If you are not being treated at a major melanoma center (MD Anderson, Moffitt, Sloan Kettering, etc.), you might want to go to one near you. They will also have docs that specialize in melanoma. They can then provide you with a comprehensive plan and approach for treatment. Best wishes.

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      Carmon in NM
      Participant

      I can't help any more than the others already have with treatment options or advice but we have all been where you are now in that state of shock, fear and numbness. Take a deep breath and know that nothing is ever hopeless and there is a world of support here for you and so many more treatment options than there were a few years ago.

      Sending you a virtual hug and hoping you will continue to come back as you receive new information and with questions as they come up. Carmon in NM

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      Carmon in NM
      Participant

      I can't help any more than the others already have with treatment options or advice but we have all been where you are now in that state of shock, fear and numbness. Take a deep breath and know that nothing is ever hopeless and there is a world of support here for you and so many more treatment options than there were a few years ago.

      Sending you a virtual hug and hoping you will continue to come back as you receive new information and with questions as they come up. Carmon in NM

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      moi
      Participant

      Thinking of you Sarah, hope you will post if you feel up to it.

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      moi
      Participant

      Thinking of you Sarah, hope you will post if you feel up to it.

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      glewis923
      Participant

      We're with you.  I hope and pray that you will prevail, but as you surely know by now, it probably won't be easy.  Good advice and inspiration abounds from many of the "old-timer" stage IV'ers, like Nicole and Amy.

      Not sure the reference, but i wholeheartedly agree with what NicOZ sez about not asking for a "time frame".  I tend to be a bit put off with that,  I refuse to ever ask any Dr. that cause A) Only God really knows.  B) I think I would know better than some textbook hypothetical stat.  C) There are 3 kinds of lies: Lies, damn lies, and statistics.  D) There is always the 1 to2% miracle, and the 5 to 20% miracle drug.

      Take it one step at a time, and demand a sense of urgency with your Drs. …..the squeeky wheel gets the grease.  Wish i could make it all go away for myself and ALL, but we do the best we can.  You have friends located here, as well as in your immediate world.

      Wishing all the best,  Grady & Family.

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      glewis923
      Participant

      We're with you.  I hope and pray that you will prevail, but as you surely know by now, it probably won't be easy.  Good advice and inspiration abounds from many of the "old-timer" stage IV'ers, like Nicole and Amy.

      Not sure the reference, but i wholeheartedly agree with what NicOZ sez about not asking for a "time frame".  I tend to be a bit put off with that,  I refuse to ever ask any Dr. that cause A) Only God really knows.  B) I think I would know better than some textbook hypothetical stat.  C) There are 3 kinds of lies: Lies, damn lies, and statistics.  D) There is always the 1 to2% miracle, and the 5 to 20% miracle drug.

      Take it one step at a time, and demand a sense of urgency with your Drs. …..the squeeky wheel gets the grease.  Wish i could make it all go away for myself and ALL, but we do the best we can.  You have friends located here, as well as in your immediate world.

      Wishing all the best,  Grady & Family.

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      mygirlmaddy
      Participant

      Hope is everything, so hang on to it.  I would definitely be sure you speak with a melanoma specialist before agreeing to surgery.  It is not always (and most often isn't) the best choice at this stage.  My husband is stage 4 with multiple subcutaneous mets, two positive lymph nodes and two nodules on his pancreas.  We've been dealing with this for a year this week and all of my research says that beyond the initial site and lymph nodes, surgery can be a costly mistake.

      I'm not an expert, just want you to talk to one before agreeing to something just for the sake of taking the "next step".

      My heart goes out to you.  I hope you can make peace with the diagnosis quickly so you can focus on your treatment.

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      mygirlmaddy
      Participant

      Hope is everything, so hang on to it.  I would definitely be sure you speak with a melanoma specialist before agreeing to surgery.  It is not always (and most often isn't) the best choice at this stage.  My husband is stage 4 with multiple subcutaneous mets, two positive lymph nodes and two nodules on his pancreas.  We've been dealing with this for a year this week and all of my research says that beyond the initial site and lymph nodes, surgery can be a costly mistake.

      I'm not an expert, just want you to talk to one before agreeing to something just for the sake of taking the "next step".

      My heart goes out to you.  I hope you can make peace with the diagnosis quickly so you can focus on your treatment.

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